The last 2 days have felt like 20 years. Part 1 of Honora's crazy entrance to life is here. Let's start with a funny and miraculous story:
Thursday I was discharged and got to go home. I went straight to bed for a nap. While I was sleeping the neonatologist called and spoke to John. She said, "Honora made some medical decisions for herself today that I wouldn't have made." That little dickens had pulled out her own ventilator tube! Independent woman. When the doc went to put it back in she noted Honora was breathing fine on her own. Even though she's only 32 weeks gestational age her oxygen level and respiration were doing great, so they left it out!
Other good news, before we get to the tough part:
Her vitals all look good; it appears her liver and kidney are healing and doing their thang
Her pupils contracted on Saturday morning, meaning they can react to light, meaning she's not blind
She was seizure-free from 7pm Wednesday onward and we got to see all that gorgeous dark hair when they took the EEG monitors off her head
I love breastfeeding my babies. I hate pumping. Exclusively pumping just doesn't work for me. By Thursday I was super swollen and uncomfortable. BUT As soon as I got home, everything let down.
Ah, sweet success.
So, Friday was a high point. Despite a wicked migraine and my ongoing slow c-section recovery, I had a great day reuniting with my sweet toddlers again. (I can't call them babies any more; they're huge compared to Nora!) My wonderful parents took amazing care of them and my in-laws arrived to trade off kid care (and cooked us a lobster, steak and scallop dinner!) I went to bed hopeful we'd finally, FINALLY be able to hold her on Saturday as they promised we could once her EEG monitors came off.
Then Saturday morning came, and the phone rang. I hate when the phone rings.
John was talking with the doctors upstairs and I heard him say, "What are our options?" My heart sank. I joined him in our room and we learned something terrible; Nora's x-ray showed her abdomen was full of free air, meaning she had a perforation in her bowels. She needed surgery and a transfer to Inova Fairfax as soon as possible. Her stomach had turned green and puffy. The doctor was concerned it was nectrotizing enterocolitis, a terminal disease that starts by killing the bowels and can't be stopped. She said we should come see Nora as soon as possible.
I melted. All week I'd been dealing really well with the traumatic delivery, but the dam broke. And my gosh how it hurt. I was right there on the cross with Jesus, and I couldn't get off. Knowing this might be our last time seeing our girl absolutely raked my heart across the coals. I brought my good camera to take pictures in case this was goodbye.
Words can't tell what I felt in that hour.
As I covered her tiny body with as much as my hands could reach, I was given a moment of great grace. I became very grateful for exactly that moment, without thinking of the future. I told her, "My sweet baby, it is so good that YOU ARE. If you can live through this and come home to us, you have a world of love waiting for you with your daddy and your siblings and me. But if you can't keep breathing and Jesus wants you back, I am so grateful for every moment I got to see you and feel you and be close to you. Your life is precious and you are so wanted. And I love you with all my heart."
And that's perhaps the holiest prayer I'll ever pray in my life, to want her so much and yet to let her go. It was all grace. Our priest calls life "The school of surrender." He's right.
The medical transport team arrive and put her in a spaceship to Inova Fairfax in Northern Virginia.
Kidding. But doesn't it look like a spaceship? It's even called "airborne." It's totally a spaceship. Not only does she have more sacraments than her siblings, but she's riding in a spaceship. Total bragging rights.
I can't count the tears I cried yesterday nor measure the distress I felt as we drove to Fairfax. My dad called to tell me no hotel was accepting reservations because D.C. is like a city under siege in advance of the inauguration. And then it started snowing a gross rain-snow mix. I told John, "If my life were a movie, I absolutely wouldn't watch it."
We arrived at Inova Fairfax, a hospital with an extremely impressive 107-bed NICU. Just the lobby alone puts King Solomon's temple to shame. I'm not even sure the Queen of Sheba deserves care here, let alone us. The surgeon took us into a room quickly to lay out the procedure and get consent forms signed. We were relieved, after the most stressful day of our lives, to hear that the surgery he planned to perform was minimally invasive. He planned to just poke a little hole in her belly and insert a drain to release the air and any infected fluids. Then, as long as her vital signs remain stable and antibiotics do their thing, she wouldn't have to go through the more invasive open surgery the other team of docs had told us she needed. It was also reassuring to hear that he performs many of these and that, after examining her, he felt good about her prognosis.
Surgery went well, and our girl proved as she has already so many times this week that she has a strong will to live. Drugs have knocked her out since last night and I'm so glad to see her resting peacefully today. Vital signs remained stable all day. This is a setback, but I'm happy her chances of survival are no lower than yesterday. Deo gratias.
This is an exhausting rollercoaster, but in a weird way it's an answer to a prayer. You see, this year I've seen the ugly side of humanity more than ever before in my life. I've seen the USA become (perhaps irreparably) divided. I've seen politicians and institutions morally fail time and again. I've seen people ignore each other's humanity. I've been publicly rebuffed, scorned, banned, and mocked for being a Christian. It's been difficult to have faith in humanity. And over and over again, I've asked God, Where are you? Are you still here? His answer to me is: "Yes. I'm right here." Everyone who has prayed, sent meals, sent messages, sent gifts, sent love: You prove the goodness and the providence of God to me.
The plan moving forward is for Nora to stay here in Fairfax for at least a month. The Ronald McDonald house is closed for renovations....of course. 🤦♀️ We'll be vagabonds away from our home, our community, and, to some extent, our kids. I'm going to have to get used to my heart being in multiple places at once. Siblings can't visit the NICU so I have to be a part-time mom to all 3 for a while. We're so blessed to have friends who have offered us places to stay in Northern VA this week, and my parents live in Manassas which is a 45-minute ride from the hospital. Not ideal in an emergency, but could be much worse. God is providing for these vagabonds at every turn.
I hope for a boring life. Raffy, Zelie and Honora all home with John and me. All healthy and doing nothing extraordinary. Just playing and having "pick-picks" (picnics) in the sunshine in our backyard. It sounds so sweet. In the meantime, all my prayer warriors out there, you're making a world of difference. I love each of you. I'll keep updating the blog as our journey develops.
Blessed Carlo Acutis, St. Gianna Molla, and Holy Family, pray for us!